Thyroid UK
84,252 members99,276 posts

Celiac disease

About month ago I saw immunolgist who ordered lot of blood tests to check forother autoimmune disease. Bloods were taken but for some reason the weren't tested so I need to go to my hosiptal and get them redone. One thing they are checking for is Celiac disease but I haven't been eaten anything with gluten for a while. So to get the correct result I need to eat gluten again which I want to do but at the same time don't want to risk it in case makes me worse. Thoughts?

One test they did was Creatine Kinase with my result being 58 and range 40 -320. Should be concerned with that? I mean it's in normal range but quite a low normal

other lupus bloods

DRVVT 0.87 RANGE 0-1.2

PTTLA 1.03 RANGE 0-.1.2

ACTI 30.50 FS SECONDS 30.50


Also says Lupus anticoagulant not detected


ALT 14 RANGE 0-50

ALP 67 RANGE 30-150



6 Replies

If giving up gluten works for you, does it matter if you are labelled Coeliac or not? Many of us are wheat intolerant anyway.

I'd just stick with eating gluten free and not knowing.


The coeliac blood test is notoriously inaccurate anyway.

See my profile for "coeliac or not?" tale......still not confirmed / decided even after an endoscopy. Now having DNA tests.

As Anthea says, I just stick to GFree anyway 😃

1 like

But only if you test positive for coeliac can you get prescription foods

1 like

But GF much more widely available now and many CCG's are looking at withdrawing the prescriptions anyway.

1 like

As mentioned above, the blood test for Coeliac Disease is rather unreliable. I've been diagnosed Coeliac over 40 years - well twice actually. I'm 61 and when I was little, there were no tests for CD so if they suspected you had it, they would trial a GF diet and see if you started to get well. It was also believed at that time that it was a childhood illness that you would grow out of and I was put back on 'normal' food at around age 7. I had a very turbulent teenage time and wonder if this was probably down to eating gluten and when I got to early 20s, I noticed some foods definitely didn't agree with me. I asked the GP to test for CD and they agreed because my early years showed that I had already had it.

So they did a blood test which was negative, but I was sent for an endoscopic biopsy and this proved conclusively that I did have CD. At that time the tube they put down your throat was a lot wider than it is now too!

One of the most classic symptoms of CD is anaemia, so ask if you can have a blood test for that, then most typical symptoms would be tummy bloating (when I was little they called it Belsen belly as children looked very malnourished like Belsen children did, with a very distended belly) and what used to be termed 'explosive motions'. These are the main symptoms.

And as others have had, don't rely on being able to get gluten free food on prescription as many NHS trusts and Clinical Commissioning Groups are beginning to withdraw this choice and you couldn't get all GF foods on prescription anyway. Also many pharmacists have a block on quite a number of GF items because the delivery cost to the pharmacy is too expensive.

To have a successful result from a biopsy, you do need to have been eating gluten for around 6 weeks before the test. Gluten damages the silky fronds called 'villi' in the lining of the intestine and if you stop eating it the villi start to recover. So if you stopped eating gluten before the biopsy, they might not see any damage.

But if you feel well with no gluten in your diet, then stick with it :-)

1 like

I agree with all the posts above.

I was diagnosed with cd over 10 years ago, but to do so, had to do the dreaded gluten challenge for a month.

It was awful, because like you, I had chosen to eat gluten free for several months.

I wouldn't wish that month on my worst enemy.

Seriously, if you feel better eating gluten free then don't bother with the gluten challenge.

However, if you want further advice, check out the coeliac uk website and go on their forum. They may have some more constructive comments.

Good luck and stay healthy my friend xxx


You may also like...